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  • LPR as something else, falsely being treated as acid reflux? Probably...

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    Old 12-12-2010, 03:35 PM   #31
    Xhale12
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Let us know how it goes.

     
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    Old 12-15-2010, 11:33 PM   #32
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Thank you, Sunrise Seeking, for drawing attention to the possibility that many people diagnosed with LPR are actually suffering from LSN.

    After reading your references I believe that I am far more likely to be suffering from LSN than LPR.

    Like you, my chronic cough and post-nasal drip began with a cold and cough. The cough was one of the worst I have ever had, and it was followed by a repeated buildup of mucus in my bronchia which had to be coughed out every few minutes. I believe that the mucus originated in my nose, because it was white & frothy with a nasal smell. And it subsided into a post-nasal drip, which is still with me.

    My ENT suggested that I might have LPR. I was doubtful. I have heartburn only a few times each year, and I sense stomach acid rising into my throat (typically as a result of a burp gone wrong) only about once a year. Still, he asked me to take a PPI for 6 months, and he gave me a free sample to start with, and two repeat-subscriptions.

    I asked if my throat should be examined first, but he advised that it was less invasive to just take the drug. I asked how the PPI worked, and he said that it reduced stomach acid. But, I asked, wouldn't that affect digestion? No, he said, it had no effect on digestion. Did it work, I asked, by reducing the strength of stomach acid or by reducing its quantity? Both, he replied testily.

    I don't think that he was lying deliberately. He just didn't want to appear ignorant. But his advice to take a PPI for 6 months, without inquiring about my clinical history, was irresponsible bordering on criminal, since I had been diagnosed with B12-deficiency 6 months earlier and PPIs are known to reduce B12 absorption.

    In the event, after researching the side-effects of PPIs, I did not take it. Instead, I took B12-supplements, and this has steadily reduced the intensity of my post-nasal drip, to the point that it is little more than an annoying "frog" in the throat.

    I now blame low B12 (167 pg/ml) for the whole succession of effects. First, I was somewhat anemic from lack of B12, which weakened my immune-system and caused my cough to last weeks rather than days. Second, low B12 is known to inflict neuropathic damage. I suspect that my laryngeal nerves, damaged by the flu, were inadequately repaired due to lack of B12. The nose produces several pints of mucus per day, which is normally swallowed unconsciously, but with nerve damage can pool in the throat or be misdirected to the bronchia.

    The suggestion here that LPR-like symptoms might actually be due to neuropathy therefore stikes a chord with me. And I suggest that people who suspect they might have LSN have their B12-levels checked, and perhaps try harmless B12-supplements before resorting to Lyrica. One problem is that the "normal" B12-level in the US is set too low, and is less than half of what would be regarded as low in Japan.

     
    Old 12-18-2010, 04:36 PM   #33
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Hi,

    Just an update. I took lyrica for a couple weeks now, and my symptoms totally improved, especially with globus.
    However, it is not a complete cure all, because I didn't sleep last night, thinking it was my last night in Germany. I tied one on. I also didn't take lyrica for a day for that reason..
    Today I feel not so great. Anyway, this last week I felt more or less normal again so I kind of took it for granted and pushed a little too far.
    I'll sleep now and hopefully things will go back to how they were for the last two weeks.
    But yes, I noticed that when my symptoms did go away, the feeling was reduced to a small corner on the left of my larynx. That just seems to confirm that it is a type of neuropathy...
    Anyway, I'll continue with updates, but lyrica is definitely looking into, and it did wonders for my painful swallowing and globus.

     
    Old 12-19-2010, 09:57 AM   #34
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    New to this forum but came across this post on Google and it seems to be active. I'm just curious - have any of you been tested for Gastroparesis? It has a number of causes but one of them is damage to the Vagas nerve. EKG and EMG of leg are normal though. I have it but before developing it I had some minor neurological problems for 2yrs (allodynia, fasciculations, and aching). I visited Costa Rica last Nov and developed a fever and then within hours of taking an antibiotic I developed bad nighttime reflux. The illness disappeared but the reflux remained and I was diagnosed with Gastroparesis when I got back. This summer I was diagnosed with OSA and for 2 months I had tingling in arms and legs. My blood work shows abnormal IgA and Gamma Globulin and high IgG. Who knows what I'm fighting hopefully not myself but at least ANA isn't too bad (highest so far is 80:1). I'm glad I stumbled on your post because it sounds very plausible in my case. One of my GIs suggested I try Elavil anyway but my main GI wants to pursue a wait and see approach. I have been following Lyrica as well though. Zegerid worked well for about a month but then stopped. I take Kapidex now but it's useless. Also tried Reglen, Domperidone, and Erythromycin - all useless. So far no visible damage to my esophagus but had some burns in my mouth and acid damage to teeth. I'd guess that my esophagus won't escape visible signs for much longer. My father is a doctor so I'm going to try this out in a week (have to be off Erythromycin for 1 week to avoid long QT syndrome).

     
    Old 12-21-2010, 04:29 PM   #35
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    Unhappy Re: LPR as something else, falsely being treated as acid reflux? Probably...

    @seeking sunrise

    I may have very similar problems but the doctor found ateroma (cystis sebacea)on right side of
    my glottis and I ll go to surgery very soon...
    but my symptoms are very similar to yours ...and everything started with a stupid cold 3 months ago ... there was horrible pain and they said sinusitis and pharyngitis ( that was my first diagnose) but after very strong antibiotics it wasnt any better ,then they sent me to allergologist and he said it has nothing to do with alergies but they can run some test ..then i went back to my otorhinolaryngologist and i ve said that i feel pain deep inside my throat and
    he saw it ...I just wonder when they remove it will all my pains go away or no..
    I am very worried ...
    my symptoms are ...(from priority)
    worst thing
    1difficulty swallowing things ( pills water my own mucus ...)
    2.feeling of something sticking in my throat
    3.clearing my throat
    4.some changes in my voice hoarseness but not some horrible problems
    5.post nasal drip ( it is gone now I dont have any idea how or why)

    but interesting thing is when i go to bed and i feel asleep I dont feel any of it
    and I am happy during my sleep ...sometimes i wish i could sleep 24hr so i dont have to deal with it...I am so afraid that operation will not resolve my problems
    ...

    can u help me guys ?
    ps .sorry for my bad English ...

     
    Old 12-21-2010, 06:54 PM   #36
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Very interesting, Wicked lady!

    I'm always excited to see this because here we have the symptoms of "LPR" to a tee, but the actual reason is something totally different.

    I think if they remove it, the symptoms should go away. Did the doctor tell you that the symptoms won't go away? What reason do you have to believe that. Even if they persist, you can still use klonopin, and other sort of numbing drugs to make it better. Even tylenol helps. The great thing is, you won't be on any "reflux" diet or thinking you can't take xanax because it's bad for your reflux and such.

    That is the tragedy of LPR. Not only is the diagnosis often wrong, but if someone gets "diagnosed" with LPR, they won't do things to help their life like eating whatever they want for stress reduction, because they keep thinking about this mystery reflux and thinking their symptoms are related to it. That's what makes it such a tragedy.

    That's great to hear your doctor identified a real, physicallly identifiable cause. Please update us on whether the symptoms actually improve after the surgery (give it a week or so). Please don't just go on with your life and forget the rest of us.

    This cystal sebacea might be another thing for us to ask our ENTs to look for. Can you tell us more about it.

    Very useful post!

    Last edited by moderator2; 12-21-2010 at 07:17 PM.

     
    Old 12-22-2010, 04:57 PM   #37
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Quote:
    Originally Posted by Seeking Sunrise View Post
    Very interesting, Wicked lady!

    I'm always excited to see this because here we have the symptoms of "LPR" to a tee, but the actual reason is something totally different.

    I think if they remove it, the symptoms should go away. Did the doctor tell you that the symptoms won't go away? What reason do you have to believe that. Even if they persist, you can still use klonopin, and other sort of numbing drugs to make it better. Even tylenol helps. The great thing is, you won't be on any "reflux" diet or thinking you can't take xanax because it's bad for your reflux and such.

    That is the tragedy of LPR. Not only is the diagnosis often wrong, but if someone gets "diagnosed" with LPR, they won't do things to help their life like eating whatever they want for stress reduction, because they keep thinking about this mystery reflux and thinking their symptoms are related to it. That's what makes it such a tragedy.

    That's great to hear your doctor identified a real, physicallly identifiable cause. Please update us on whether the symptoms actually improve after the surgery (give it a week or so). Please don't just go on with your life and forget the rest of us.

    This cystal sebacea might be another thing for us to ask our ENTs to look for. Can you tell us more about it.

    Very useful post!
    Well the first ( and i think maybe the most important thing ) doctors told me ... is that even the smallest thing in mouth , throat or near this area can cause enormous problems and feeling of something "big" in your mouth...
    and they think everything will be totally normal after surgery (they said it is very similar to tonsils removal surgery) ... I will update U regularly and if they tell me something new I ll pass it on ... I ll have my preparation for surgery on 30. December lol and surgery will be on 3 January...

    by the way I am feeling a bit better last few days, still I can feel it in my throat and am still afraid of smoking and eating many things ...

     
    Old 12-22-2010, 08:42 PM   #38
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    see, this makes total sense. that's why so many things produce these symptoms. a little thing can make a big problem.

    In my case, over the last 2 and half months my problem went from full on globus to a feeling of "something" in the left corner of my larynx. I'm convinced if they do an MRI or electrotopomography (sp?) they will find something right in that corner.

    That makes so much sense though. A little thing in that area causes big problems, and for, I am very confident, most of us, it has nothing to do with reflux.

    We probably have a spectrum of 20 or more problems that produce these symptoms, and most of us get handed ppis. It's a farce. A travesty.

    You are really lucky your doctor found something real, instead of just going "oh! I know this! this must be that magic acid reflux that happens through unexplained means with no proof or evidence at all!" and then you'd be on the protonix for the next 6 months instead of getting the surgery that is going to fix you up.

    I think I might ask for an mri. One was offered in Germany and I didn't bother with it. But yes, I can feel the source now, I could probably point it out with a laser pointer for the doctor. Nobody can convince me that is reflux. It began with a virus in the throat.

     
    Old 12-23-2010, 02:58 AM   #39
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    well I have to tell u ...my doctor find if, after I told her where to look it was like this.. me: please help me !!!I feel something right here deep in my throat !!! doc: but honey your throat is fine it s not red everything look just fine?! ... me : but it is deeper down my neck (I explained the spot ) and that was 2 months after my problems started... after that doc lucked with the bizarre tool with (a little glass circle on the top) and he saw that little ******* the thing is that same doc month before sent me to alergologyst and never looked my throat there... but she didnt mention LPR either .
    she wanted bacteria analyses from my nose and throat and alergologyst opinion ...
    Did u have laringoscopy ? or some exam like I did of your throat ? while she was looking she was pulling my tongue very hard and all the time i had a feeling that i will throw up on her ( i guess just a reflex ...) ...do u feel some pain or is it more like aching on that spot? sometimes i felt it like i have something that is moving down there ...later the ORL
    specialist said that thing is "movable" ...so my guess is it is like one grape and maybe when i eat or speek it can change a bit it s position and causing that feeling...
    I hope it helps ...tell me more about what u feel right now ...so we can compare ...
    I hope we are not bothering anyone with this .... Oh I have to add that before doc found it ... my family ,other people, my internist doc ... they were all like ...oh honey
    maybe it is just the feeling? there is nothing u see? u are fine ... your tiroid is fine , your throat is fine .... :P

     
    Old 12-25-2010, 10:51 PM   #40
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Hi!
    Sorry about the late response..
    Lately I've been taking lyrica (no side effects except one that is actually kind of beneficial and doesn't deserve to be mentioned). I can't say with complete certainty, but taking lyrica seems to coincide with me feeling much better. Today was my best day since about October 5th, when this whole nightmare started.
    But still there remains a slight twinge at the left side of my throat that comes and goes, and makes me think that perhaps, if a doctor was guided to look at that exact spot, or if an MRI was taken, they would detect "something."
    Like you said (I'll paraphrase it), and I think every "LPR" patient has to have this as their mantra:

    A little problem in the throat/mouth area amounts to a big problem in how you sense it.

    Sadly, people use that as a justification to believe they have a reflux issue, when in many (most, I believe. I'm not a doctor though) cases, reflux has zero to do with our throat issues.

    I think it was, and will one day be proven to be, a horrifying mistake that many of the people on this board are working to try to treat reflux. Even if reflux treatments work for some of them, that's more or less coincidental. Supposedly, it was found in the medical journal article "Back to the diagnosis of silent GERD" that ppis have an anti-inflammatory effect (like advil, I guess). That accounts for a few of the apparent ways it can help LPR patients.

    But if that is the case, wouldn't it be better if LPR patients just took tylenol and did a service to their hearts at the same time, rather than permanently messing up their own digestive tracts?

    I think your post is really so encouraging, as were those of Aswander because you are living proof that these symptoms in the throat were actually not related IN ANY WAY to reflux, despite the fact that you both suffered the same exact symptoms that people suffer who believe they have a type of reflux.

    You guys are living proof that LPR is not the only thing that causes this laterality of symptoms. I believe and hope that when the actual problem is removed from your throat in a few days, you will recover. And when you do, don't forget to post for all of us! We all need to hear it.

     
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    Old 12-26-2010, 06:43 AM   #41
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    I just wanted to say one more thing ... talk or visit as many as u can doctors ...
    dont be satisfied with only one opinion ...and dont forget to describe everything u feel
    (be persistent ) to your doctor even if u think it s not so important ...

    I ll let u know how it went happy holidays

     
    Old 12-27-2010, 10:38 AM   #42
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    Cool Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Hi,

    I've been taking Lyrica for two weeks now and I firmly believe that it is helping to alleviate the throat problems I've had since last February. My problems began with a severe cold that originated in my larynx and spread to my sinus. In fact, I suffered two colds like this within a three-week period, and then suffered a third last October. I was starting to feel better at the end of September until I caught that third cold. At the time, I'd been using prescription strength Prilosec for almost two months. Due to the fact that my symptoms began with viral infections and were aggravated by recurring infections, I began to suspect nerve-damage. Thus, I asked my doctor if I could try Lyrica. She suggested that Neuropathic Pain could take several months to heal properly. Thus, it is still a bit too early for me to expect any sort of full recovery. My most persistent problems have been the following:

    (1) Excessive throat-clearing (but this has not been a problem over the last month).

    (2) Hoarseness and vocal fatigue

    (3) Painful Speaking (Odynophonia)

    (4) Globus Sensation

    (5) Burning sensation in the voicebox

    Furthermore, after I caught my second cold in February, I had the worst cough I ever experienced in my life. It lasted about three weeks. But for the last four months, I haven't coughed much at all. While I was sick in October I experienced some mild coughing in the morning, and this symptom did not subside for about two weeks. After three weeks of incessant throat-clearing, I began to feel better during the first week of November. However, when I took an enzyme supplement called Clear-Ease I experienced severe burning in my Larynx which lasted about three weeks. I hadn't quite felt the same since taking this supplement, which must have caused further nerve damage. However, the Lyrica definitely seems to be helping me in several ways, although I have experienced some deleterious side-effects. I've compiled a list of the positive and negative side-effects:

    Postive:

    (1) Virtually eliminated the burning sensation in my larynx (one day, it seemed to give almost instant relief of this symptom; I haven't experienced this symptom for 10 days).

    (2) Greatly reduced my globus sensation.

    (3) Greatly reduced my odynophonia (Pain upon using the voice; I had it in both my upper and lower larynx).

    (4) It seems to enhance my mood for the better. I'm somewhat happier since taking it.

    Negative:

    (1) Mild headaches.

    (2) I still have a sharp, mild pinching sensation in my larynx that comes and goes, almost as though there are some tiny pins stuck in my voicebox. I mention this because it seemed to intensify about two days after starting the Lyrica. However, after the first week, it evened out and has felt about the same ever since.

    (3) Prior to taking Lyrica, I suffered from an intense burning sensation in my right ear, particularly where my right ear joins with my throat. That had disappeared by September after I'd been taking Prilosec for several weeks. However, on the third day of taking Lyrica, that sensation returned. It was quite intense for a few days, but after the first week it was not as bad. It's been about the same since last Wednesday.

    (4) It causes dry mouth, which seems to exacerbate my upper larynx to a certain extent. I don't experience anywhere near the degree of pain that I felt a month ago after taking the Clear-Ease, but I do feel some mild pain that I don't think I would feel if not for the Lyrica.

    Let me know if any of you have taken Lyrica and are experiencing any of these side-effects or benefits. I'm supposed to touch base again with my doctor in a couple of weeks. I'm only taking 75 mg twice a day. We may decide to increase the dosage, or even switch to a different medicine. I'll submit another post after another two weeks.

    Happy New Year everybody!

    Last edited by Sheepdog12; 12-27-2010 at 10:41 AM. Reason: Spelling Error

     
    Old 12-27-2010, 10:44 AM   #43
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Quote:
    Originally Posted by Sheepdog12 View Post
    Hi,

    I've been taking Lyrica for two weeks now and I firmly believe that it is helping to alleviate the throat problems I've had since last February. My problems began with a severe cold that originated in my larynx and spread to my sinus. In fact, I suffered two colds like this within a three-week period, and then suffered a third last October. I was starting to feel better at the end of September until I caught that third cold. At the time, I'd been using prescription strength Prilosec for almost two months. Due to the fact that my symptoms began with viral infections and were aggravated by recurring infections, I began to suspect nerve-damage. Thus, I asked my doctor if I could try Lyrica. She suggested that Neuropathic Pain could take several months to heal properly. Thus, it is still a bit too early for me to expect any sort of full recovery. My most persistent problems have been the following:

    (1) Excessive throat-clearing (but this has not been a problem over the last month).

    (2) Hoarseness and vocal fatigue

    (3) Painful Speaking (Odynophonia)

    (4) Globus Sensation

    (5) Burning sensation in the voicebox

    Furthermore, after I caught my second cold in February, I had the worst cough I ever experienced in my life. It lasted about three weeks. But for the last four months, I haven't coughed much at all. While I was sick in October I experienced some mild coughing in the morning, and this symptom did not subside for about two weeks. After three weeks of incessant throat-clearing, I began to feel better during the first week of November. However, when I took an enzyme supplement called Clear-Ease I experienced severe burning in my Larynx which lasted about three weeks. I hadn't quite felt the same since taking this supplement, which must have caused further nerve damage. However, the Lyrica definitely seems to be helping me in several ways, although I have experienced some deleterious side-effects. I've compiled a list of the positive and negative side-effects:

    Postive:

    (1) Virtually eliminated the burning sensation in my larynx (one day, it seemed to give almost instant relief of this symptom; I haven't experienced this symptom for 10 days).

    (2) Greatly reduced my globus sensation.

    (3) Greatly reduced my odynophonia (Pain upon using the voice; I had it in both my upper and lower larynx).

    (4) It seems to enhance my mood for the better. I'm somewhat happier since taking it.

    Negative:

    (1) Mild headaches.

    (2) I still have a sharp, mild pinching sensation in my larynx that comes and goes, almost as though there are some tiny pins stuck in my voicebox. I mention this because it seemed to intensify about two days after starting the Lyrica. However, after the first week, it evened out and has felt about the same ever since.

    (3) Prior to taking Lyrica, I suffered from an intense burning sensation in my right ear, particularly where my right ear joins with my throat. That had disappeared by September after I'd been taking Prilosec for several weeks. However, on the third day of taking Lyrica, that sensation returned. It was quite intense for a few days, but after the first week it was not as bad. It's been about the same since last Wednesday.

    (4) It causes dry mouth, which seems to exacerbate my upper larynx to a certain extent. I don't experience anywhere near the degree of pain that I felt a month ago after taking the Clear-Ease, but I do feel some mild pain that I don't think I would feel if not for the Lyrica.

    Let me know if any of you have taken Lyrica and are experiencing any of these side-effects or benefits. I'm supposed to touch base again with my doctor in a couple of weeks. I'm only taking 75 mg twice a day. We may decide to increase the dosage, or even switch to a different medicine. I'll submit another post after another two weeks.

    Happy New Year everybody!

    hi sheepdog do you still experience hoarseness/vocal fatigue and have you ever had a laryngoscopy to see what's causing the hoarseness?

    Last edited by neptunian808; 12-27-2010 at 10:54 AM.

     
    Old 12-27-2010, 10:58 AM   #44
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Hello,

    No, I no longer experience hoarseness and vocal fatigue, at least not for the last two and half weeks. Prior to then, my voice was becoming clearer and I would only have problems if I had to speak for an extended period of time. I teach at a college, so you can probably imagine just how devastating this condition has been to me. Usually, after a lecture, my voice is somewhat hoarse and my throat scratches a bit. But so long as I don't overextend my voice, I don't experience the same degree of pain that I had when all of these problems began in February and March.

    I had a laryngoscope done in June. The ENT found some minor inflammation in my larynx, but besides that, it more or less looked "normal." This is what led him to diagnose me with LPR, but he wasn't even certain. At that point, I began using some over-the-counter antacid medicine with little results, as he didn't even prescribe me anything. And he certainly didn't say anything about LSN or the possibility of nerve damage. I never even started the Prilosec, 80 mg per day, until August.

     
    Old 12-27-2010, 11:33 AM   #45
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Five months ago I swore when I finally was symptom free I would create a website providing treatments options and direction on what tests are needed to help educate others like me with this condition. It’s been a long journey and while I am better then I was five months ago, I am not symptom free but hope and pray that day will eventually come. I will try to keep this as brief as possible but as we all know trying to explain to people what’s wrong with you is no easy task nor can you explain in a few sentences. I think it’s important to understand where as I was two and half years ago to where I am today and how something like this can manifest it into other symptoms.

    Two and half years ago (36 years old) I started new sales job and had an expense account to go along with it. It was encouraged to wine and dine existing and perspective clients to help generate new business opportunities. I ate big lunches, foods rich in fat and calories, and did all the things that a typical LPR suffer should avoid doing. I began to get a lot of chest pains, difficulty breathing, and phlegm in my throat.. I had a history of heart disease in my family and figured it might be my heart. I went for a Stress test, ENT, EKG all negative. I figured if my hearts is working properly then it’s just gas and it’s not serious. After 4 months my chest pains were infrequent but my throat mucus in my throat increased substantially, so much so I had a hard time swallowing. I had to spit mucus out every few minutes (Yes it was that bad). I remember waking around my house with garbage bad that I used to jokingly call my Spittoon. I also got the typical lump in throat feeling and gained about 15lbs. I started to snore at night and used to wake up choking and feeling I couldn’t breathe. I knew then something wasn’t right. I got my lungs checked out and they were clear. I went to ENT, he looked looked down my throat and saw a lot of mucus. He gave me a food an allergy test, CT scan of my sinus to rule out post nasal drip as I have a slight deviate septum. All negative. He then gave me a FESS and Strobe test where you swallow a green dye. The liquid that was swallowed came back up and also pooled in my larynx. The technician told me I had LPR and I needed a PPI. At the time, I really didn’t get a clear understanding of how that test was interpreted and quite frankly I don’t think the Dr. or Technician really fully understood either. They could not give me an intelligent answer as to what was specifically causing the liquid to come back up. I mean how could it go into my stomach and then come up all in seconds? In any event I was prescribed 40mg of Nexium and was told to take it 30 mins before breakfast once a day.

    After three months of Nexium I felt better. My mucas was almost gone and no more lump in throat. I had my life back. The pity of it all was that the doctor did not educate me on what I should be doing to minimize this for happening again, nor did he have any plans of weaning me off the PPI. Shame on me as well for not doing my own research on LPR, but like I said I was feeling pretty much symptom free except for some slight mucus in my throat once and a while.

    Fast forward 18 months. I was 15lbs heavier than I was 18 months ago and while I didn’t have crazy lunches anymore my diet still was not a healthy one. I started to get a lot of chest pains and difficulty breathing. I said to myself it can’t be LPR, I am still taking 40mg Nexium. I schedualed an appointment with a heart Dr to get another (EKG,sonogram, and stress test) all negative. I figured it was my diet. I needed to lose weight. I was snoring and still occasionally waking up in the middle of the night gasping for air. My wife also told me I had a lot of siliva in my mouth when sleeping. My brother had just lost 35 lbs by eating no more than 50g of carbs a day and in 3 months and his blood work came back looking great. So over the next 4 months I went on low a carb diet. I lost 25lbs, my slightly fatty liver, cholesterol, and trygcylorides all became normal. While I cut out a lot of the sugar I was still eating a lot of meat and fat. I started to feel like my throat was closing up. All of a sudden out of nowhere my throat got really tight like someone had their hands around it. It wasn’t the typical lump in throat type feeling I had a couple of years ago. This was intense. After 10-15 minutes it would go away. This would happen 8-10 times a week and I was also getting more mucus in my throat, even though it wasn’t nearly as much as I had a few years back it was still enough to make me want to clear my throat alot.
    I realized even though I was taking Nexium every day it had to be LPR related. I began to research LPR symptoms and treatments extensively. I went on a strict low fat diet and avoided foods that could loosen the LES. I also made sure to elevate my bed and to wait three hours before bedtime. I tried stopping Nexium cold turkey and substituted Nexium with Zantec, digestive enzymes, and Align. I didn’t know about the acid rebound effect stopping a PPI could cause and I was not success and had to get back on PPI’s.
    At that point I realized I needed further testing to understand what was going on. I saw a GI doctor which preformed an Endoscopy. He told me my esophagus looked normal, no signs of damaged, no eosinophiilc esophagitis and the tightness feeling were in my head and I need to relax. I told him if your throat felt like mine you would be stressed out too. (What a Jack ***.) I didn’t have stress in my life except this illness. I did try meditation and hot baths which helps calm down but didn’t make the tightness in my throat go away.
    I then went to a different ENT from the incompetent one I saw two years ago. He looked at my throat and told me it looked slight swollen but I did have a lot of mucus pooling. He told me diet was important and to follow it by the book which I knew anyway. He said the lump in my throat was because some people are just more hypersensitive to it than others. He also mentioned PPI’s don’t block pepsin and that was the cause for LPR suffers and not just acid. He wanted me to get a barium swallow to ensure I had no obstructions or abnormalities in my esophagus. So I did. It was negative, everything looked normal.
    OK, well having a hypersensitive UES doesn’t make me feel any better. He mentioned Pepsin could be the root cause. So I began researching that and found out if Pepsin is indeed the cause the only thing aside from surgery that could help is by taking 10ml Galviscon Advance before meals and at bed. (UK version of med)
    I used Gaviscon advance + low acid diet for a month. Went back in for a checkup and my mucas pooling was a lot better but I still had tightness. He told me I am going to have to live with the tightness and said I should be happy my throat is much improved.
    I was utterly frustrated and decided to get another opinion as I could not imagine my life on this planet with tightness in my through for the rest of my life. While waiting for my appointment date for the new ENT my tightness suddenly went away. Could it be? No more tightness? Yes it’s gone but wait I have a new symptom. I have trapped gas in my throat and chest pains. Gas in throat? ***. How can someone have gas in their throat? After further research it seems people who get the Nissan surgery have this as a side effect to the procedure (Something to do with the one way value it creates )

    Anyway, I get my appointment with the new ENT and upon my throat examination which previous Dr. said was normal, was in actuality false. MY larynx was still swollen and one of the folds were not resting in the down position. The instrument used was incredible. It looked like an HD picture of my throat. You can actually see the bubbles in my mucus. It’s as if the other ENT’s were looking at my throat through coke bottles and I got a print out of my throat for my own records, something other doctors would not disclose to me. It was then recommend I do a manometry and PH test. The Manometry showed my UES mean residual pressure was elevated and there was dyssynchrony with my pharynxand . In other words my UES was closing prematurely before the pharyngeal contraction. However, my LES hypotensive(ever so slight relaxed) was functioning normal(Meaning it was closing and opening when it was supposed to). My 24 hour PH Test should I had one episode during the day that reached my throat. One thing noticed when I had that god forsaken probe hooked up to me is that the only time the ph went down under 4 is when I burped. When I say burp I mean an ever so slight quite burp. Seems like it happened after I drank water which then made me burp and seconds later made lower LES sensor go down.

    So 2.5 years ago when I took that FEES test that why the liquid splashed back up and that’s why my throat felt tight. Based off the Manmotry, my UES is out of whack and what causes the swallowing mechanism? Ding Ding Ding. The Vagus Nerve. My PPI was switch to twice a day Prilosec 40mg but I could not tolerate it as I was getting Nauseas. I then went to Prevacid 15mg twice a day to get better coverage vs the typical 40mg Nexium once a day( as ppis only work for 12-16 hours),I also take domperidone 10mg 3x a day to help empty stomach faster and stimulate moltility, and continued my low fat/acid diet. After five months my throat Is completely normal! Hurray. Well not so fast.
    Gas in throat and chest pain is still present. I was put on amitritlyne 10mg before bed to stimulate that Vegas nerve. I was told it has been prescribed to many patients who have had the reflux surgery who get that trapped in throat gas feeling. The drug has been slowly ramped up to 25mg and is has almost eliminated trapped gas in my throat it but I still have chest pains which come and go throughout the day. They are not fun.

    I have done further research and they are classified as NCCP’s Non Cardiac Chest Pains and guess what the treatment is for that? TCA’s or SSRI’s. If you look for a book called The Forgut: Function-dysfunction and look at page 57 you will see what the drug treatment plans are for esophageal pain are. For the life of me I can’t say with a 100% certainty that these pains aren’t gas related but I don’t think they are. I think they are related to my Esophagus dsymotility. The NCCP symptoms happen quite often in a molity disorder called Achalasia in which the LES remains to tight not allowing food or acid to pass into the stomach in turn food ferments and acidis trapped above the LES causing (NCCP)chest pain, regurgitation and other fun symptoms. The bright side is there’s an easy fix as you can get a botox injection in the LES and loosen up the muscle but as said before my LES is working as intended and it’s the UES that’s the problem. Some people who have continued tightness in UES and don’t have any motility disorder could get a botox injection in to alleviate the tightness. I did not need this thankfully.
    In my case I had acid/pepsin issues causing my throat LPR issues or so I think. The million dollar question is this. Are my reflux issue caused by the malfunctioning UES/Swallowing mechanism or is it two separate issues?
    Something else this thread made me wonder about with talk of drugs that help treat NP conditions like Fibromyaliga. When I was a teenager I came down with mono. After that for about 2-3 years constantly got sore throats. I was on antibiotics every other month. The idiot GP doctor told me everything was normal and I just need to take antibodies as I was a teenager and got sick due to my age. My mom finally took me to an ENT. He told us that Dr. should not be practicing as my tonsils were badly infected and needed to be taken out immediately. After getting those out I didn’t get sore throats anymore. Over the course of the next five years I had two stressful times in my life. During the first time I had low grade fever for three weeks and they though I had leukemia. Turns out it was Epstein Barr. Next time I got a relapse. Thankfully it never turned into Chronic Fatigue and for the next fifteen years I never get sick that bad anymore but it makes you wonder if there was any damage done back then or if any of this is related to the Vagus nerve and my swallowing motility issue
    How many people out there went for an endoscope, barium swallow, FEESS, 24 hour PH test all with no diagnosis? I wonder how many of you out there went for a High Def manometry to see if you have something screwy going on with your swallowing. Many GI doctors who perform manometrys do not measure UES and are only concerned with the LES. The drugs mentioned in this thread can hold the future for many people like us who are experiencing crazy symptoms in our throats because ultimately unless you have a physical abnormality in your throat or esophagus, it’s something related to that darn vagus nerve.

    Just like research into chronic coughing there has to be more Dr. out there to look at some of these non-specific esophageal motility disorder stem from the brain but have no clue on why they act the way they do.
    I am probably going to have to increase my dosage of TCA or try a different one if my NCCP pains doing get better. I should mention the side effects I am getting from the amitritlyne are constipation and jitters(like a caffeine rush) that happened between 10:30am every day and last for 15-20 mins. I hope and pray I do get relief and pray for many of the sufferers out there with LPR symptoms to finally get their lives back!

    Last edited by gpinzone; 12-27-2010 at 12:11 PM.

     
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